many Social Security mdrc Health Benefits for the Uninsured P O L I C Y B R I E F

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1 mdrc BUILDING KNOWLEDGE TO IMPROVE SOCIAL POLICY Health Benefits for the Uninsured Design and Early Implementation of the Accelerated Benefits Demonstration by David Wittenburg, Peter Baird, Lisa Schwartz, and David Butler P O L I C Y B R I E F Center for Studying DISABILITY POLICY Mathematica Policy Research, Inc. SEPTEMBER 2008 many Social Security Disability Insurance (SSDI) beneficiaries have serious health care needs, but, under current law, most are not eligible for Medicare until 29 months after the Social Security Administration (SSA) has established the onset of their disability. To test whether providing immediate health care and related services leads to improved health and better return-to-work outcomes for newly entitled SSDI beneficiaries, SSA funded the five-year Accelerated Benefits (AB) Demonstration. AB will provide the first set of rigorous findings on the efficacy of providing earlier access to health benefits for a population of beneficiaries who have no medical coverage when they first become entitled to disability cash benefits. This brief provides an overview of the AB project and describes findings from the initial phase of enrollment from October and November 2007 and plans for full implementation. WHAT IS THE RATIONALE FOR THE ACCELERATED BENEFITS DEMONSTRATION? Lack of health care coverage has been identified as one of the key barriers that keep people with disabilities from obtaining employment and becoming economically self-sufficient. SSDI beneficiaries must complete a five-month waiting period before becoming entitled to cash benefits; most wait another 24 months before becoming eligible for Medicare. During the Medicare waiting period, some beneficiaries have health insurance, but others do not. SSDI beneficiaries who do not have health insurance during the Medicare waiting period are more likely to delay or go without needed health care than those who are insured. 1 The goal of the AB Demonstration is to assess the efficacy of providing newly awarded SSDI beneficiaries who have no health care coverage with immediate access to health benefits. Lack of health care coverage has been identified as one of the key barriers that keep people with disabilities from obtaining employment and becoming economically self-sufficient. With earlier access to health benefits, beneficiaries may be able to achieve better health outcomes, increase their likelihood to return to work, and reduce their longterm dependence on SSDI benefits. To help policymakers determine whether additional services can increase the effectiveness of providing health benefits alone, two versions of AB are being tested. One group of AB study participants will receive access only to a relatively generous health benefit plan. A second group of study participants (AB Plus) will receive the same health benefit plan, plus additional services by telephone that include care management; a behavioral motivation program called the Progressive Goal Attainment Program (PGAP), designed to increase the activity levels of participants; and employment and benefits counseling. The chart on page 2 presents the different services these two groups will receive in more detail.

2 2 AB HEALTH BENEFITS (AB) AB will pay for health care from the time of enrollment in the project until participants are eligible for Medicare. The plan covers basic health care as well as some types of specialized therapy and rehabilitation supports designed specifically for people with disabilities, such as durable medical equipment. It includes dental care, vision care, and prescription drug coverage. It has modest out-of-pocket expenses for participants to encourage service access. There is a $100,000 capitation on costs for each participant. AB PLUS SERVICES (AB PLUS) AB Plus participants will receive the AB health benefits described above and also have access to the following services by telephone: (1) medical care management, (2) a three- to four-month behavioral support program called the Progressive Goal Attainment Program (PGAP), and (3) employment and benefits counseling. Clinical health professionals will deliver the first two services. The third service will be delivered by staff with expertise in providing employment services and benefit counseling to SSDI beneficiaries. The three services can be used at any point during the intervention and will be customized to meet each participant s needs. (After reaching the $100,000 capitation on health costs, an AB Plus participant would still be eligible to receive these three services.) The goal of care management is to help participants identify their medical needs and to provide guidance on the use of their health plan. The goal of PGAP is to incrementally change daily routines through behavioral rehabilitation in ways that will reduce the participant s perception of disability, better manage pain and discomfort, and increase the likelihood of returning to work. Finally, the goal of the employment and benefits counseling is to promote return to work by providing career planning, job search, and referrals as well as information on SSA work incentives and the effects of earnings on SSDI benefits. MDRC POLICY BRIEF The rigorous evaluation of AB will provide SSA with empirical data with which to analyze the role that early access to health care benefits plays in health and employment outcomes for SSDI beneficiaries. The evaluation will also inform policymakers about the potential for improving health care coverage, including legislation aimed at eliminating the Medicare waiting period, such as The Ending the Medicare Disability Waiting Period Act of These findings will also complement SSA s other demonstration projects, which policymakers can use to identify the best combination of supports in serving SSDI beneficiaries. WHO IS ELIGIBLE TO PARTICIPATE IN AB AND AB PLUS? Newly entitled SSDI beneficiaries, age 18 through 54, who have at least 18 months before their first date of entitlement to Medicare coverage are eligible to participate in the AB demonstration project. 2 SSA administrative records are used to identify the pool of potential study participants. These individuals are contacted and a short screening interview is used to determine which beneficiaries have no health insurance and are therefore potentially eligible for the study. 3 Eligible SSDI beneficiaries who consent to participate in the demonstration then complete a baseline interview and are randomly assigned to the AB, the AB Plus, or a control group. This study population represents a subset of newly awarded SSDI beneficiaries who could directly benefit from the medical coverage provided by the AB health plan for 18 to 24 months before they are eligible to receive Medicare. This population is not necessarily representative of all new SSDI beneficiaries. However, if AB and AB Plus are not shown to be successful for these beneficiaries, who lack health insurance and are younger than the average person eligible for SSDI benefits (which includes beneficiaries up to age 64),

3 SEPTEMBER 2008 then it is unlikely that AB and AB Plus would be successful for a wider group of new beneficiaries. During the initial study phase in October and November 2007, AB study participants were selected from four metropolitan areas. However, the full rollout of the demonstration, which began in March 2008, includes participants from 53 large metropolitan areas (see the map on page 6). The selection of AB study sites is discussed in more detail later in the brief. The demonstration will include a sample of 2,000 beneficiaries who volunteer to participate in the project: 400 will be randomly assigned to the AB program group that receives only access to health benefits; 800 will be randomly assigned to the AB Plus program group that receives health benefits and additional services; and 800 will be randomly assigned to a control group. AB and AB Plus participants will receive the health benefit plan and program services until they become eligible for Medicare. HOW WILL THE DEMONSTRATION BE EVALUATED? AB and AB Plus are being evaluated using random assignment because it is considered the most rigorous method of evaluating programs. The core of the analysis will be a comparison of outcomes across the AB, AB Plus, and control groups, as shown in the table. The evaluation includes three components: (1) a process study, (2) an impact analysis, and (3) a cost-benefit analysis. Each component of the evaluation will use data gathered from three surveys of project participants (a baseline survey and surveys conducted six and 12 months after random assignment), SSA administrative data, Management Information System (MIS) data on the services provided to the AB and AB SUMMARY OF COMPARISONS FOR THE EVALUATION COMPARISON AB group to the control group AB Plus group to the control group AB Plus group to AB group IMPLICATIONS Effects of the health care benefits alone Plus groups, and qualitative data collected throughout the project. The process study will describe how the program was implemented, how participants were recruited for services, and ultimately how AB health benefits and AB Plus services were delivered. The impact analysis will estimate the effects of AB and AB Plus on health, employment, SSDI benefits, quality of life, and other outcomes. Finally, the cost-benefit analysis will examine the relative costs and benefits of the AB and AB Plus interventions. The project will measure the short-term effects of AB and AB Plus over a one-year follow-up period, though it is likely that both of the interventions could have longer-term impacts, especially on SSDI exits, employment, and use of Medicare. Impacts on these outcomes could be readily measured over a longer period using administrative data from SSA and the Centers for Medicare and Medicaid Services. Additional surveys could also be fielded to measure any long-term impacts on outcomes not included in administrative data, such as improvements in health and well-being. WHAT WAS TESTED DURING THE INITIAL PHASE OF THE PROJECT? Enrollment and program activities began on a limited scale in October and November 2007 in Houston, Minneapolis, New York, and Phoenix. The four areas were selected to Effects of the combination of health care benefits and other services Effects of adding AB Plus services on top of the health care benefits 3

4 MDRC POLICY BRIEF 4 Eligible beneficiaries reported a strong interest in participating in the demonstration, which led to a much faster than expected recruitment. provide regional diversity and to include both large and moderately large cities. During the initial phase, 66 beneficiaries were recruited: 26 were randomly assigned to AB Plus, 13 to AB, and 27 to the control group. The initial phase of enrollment was used to learn more about the size and characteristics of the target population and to assess the feasibility of delivering AB and AB Plus services to a small group before enrolling the full sample. The outcomes from this initial phase have been used to refine recruitment processes and determine how many beneficiaries and metropolitan areas would be needed for the full rollout. The initial phase assessment also included a review of MIS data on service delivery and interviews with staff and participants to determine if changes were needed in the design or the delivery of program services. WHAT WERE THE RECRUITMENT FINDINGS FROM THE INITIAL PHASE? Eligible beneficiaries reported a strong interest in participating in the demonstration, which led to a much faster than expected recruitment. After only eight days of telephone interviewing, survey operations were slowed down to limit recruitment to the targeted level. Because the sample in this initial phase is small and was so easily recruited, caution must be used in interpreting the findings. Nonetheless, several key findings are likely to carry over to full sample enrollment: The majority of screened beneficiaries had health insurance. Of the approximately 1,500 beneficiaries who were mailed invitation letters, 427 were screened. 4 Of these 427 beneficiaries, 66 (16 percent) had no health insurance and, therefore, were eligible for the demonstration; 288 (67 percent) were screened out because they had health insurance; and 73 (17 percent) were screened out for some other reason (institutionalization, death, or inability to complete the interview). All eligible beneficiaries agreed to participate in the demonstration. Recruitment went faster than expected primarily because all eligible beneficiaries consented to participate in the study. This finding underscores the strong demand for health services by uninsured beneficiaries. Uninsurance rates for the screened sample varied substantially across the four Metropolitan Statistical Areas (MSAs). Uninsurance rates, defined as the proportion of the screened sample that had no health insurance coverage, ranged from 8 percent in Minneapolis to 24 percent in Houston. This finding suggests uninsurance rates of SSDI beneficiaries are likely to vary across metropolitan areas. The majority of beneficiaries with health insurance had coverage through a private source. Of the 288 beneficiaries who were ineligible because they had insurance, over half had private insurance coverage either through their spouse or an individual plan. The remaining portion reported coverage through Medicaid, Workers Compensation, and Consolidated Omnibus Budget Reconciliation Act (COBRA) continuation health coverage. The characteristics of uninsured beneficiaries differ from other new SSDI beneficiaries. Compared to those who were screened out of the study because they had health insurance, SSDI beneficiaries who were eligible for the AB demonstration included more women, more people with mental disorders, and fewer people with cancer.

5 SEPTEMBER 2008 WHAT WERE THE PROGRAM EXPERIENCES FROM THE INITIAL PHASE? The early program experiences of the AB and AB Plus service providers and participating beneficiaries indicated that program services were generally being provided as originally specified, although the project team did identify a few areas where improvements were needed. The early findings included: A large demand for health benefits and related services exists among uninsured new SSDI beneficiaries. All eligible individuals who were contacted agreed to participate in the study, and those who were randomly assigned into AB and AB Plus enrolled in the programs. All those assigned to AB Plus agreed to engage in initial program services. Participants did not report any major problems to the AB program hotlines about the AB health plan benefits. A small sample contacted by the research team during the first three months of operation reported being satisfied with the initial services. The majority of the AB Plus group used medical care management services. Almost 70 percent of the participants (18 of 26) used medical care management to help them address care needs and navigate the health care system. This level of service use was consistent with the research team s expectations before the project. Care management staff helped to meet a diverse range of medical needs while still maintaining a focus on increased independence and selfsufficiency as primary goals. The response to the behavioral motivation services (PGAP) was mixed, which led to modifications to this component of the intervention. Although most participants expressed interest in PGAP and agreed to receive information about the program, only 9 of the 26 participants used these services. PGAP required a higher level of commitment from participants than other AB Plus services. Additional training and new procedures have been implemented to increase participation by providing more individually tailored explanations of the value of early engagement in PGAP. More participants used benefits counseling and employment than expected. The majority of AB Plus participants enrolled during the initial phase expressed a desire to return to work, and 14 of the 26 participants requested employment and benefits counseling services. While the unexpected demand is a desirable result, not enough staff were available to meet the demand. In response, more employment and benefits counselors were hired, and new procedures were developed to better coordinate PGAP and employment-related services. WHEN AND WHERE WILL THE DEMONSTRATION BE IMPLEMENTED DURING FULL ROLLOUT? Based on the successful recruitment and enrollment findings during the initial phase, the full rollout of the demonstration started in March 2008 and includes enrollment activities for the remaining 1,934 participants in 53 large metropolitan areas (see map). The selection of 53 metropolitan areas balanced SSA s needs for a national demonstration project with the practical challenges of providing AB and AB Plus services in a large number of areas. The 53 metropolitan areas include sites spread throughout each of the 10 regions served by SSA. Because providing demonstration services is more expensive when additional areas are included, the demonstration was limited to the most densely populated metropolitan areas from 5

6 MDRC POLICY BRIEF Seattle Portland Sacramento Oakland Las Vegas Los Angeles Orange Riverside Phoenix San Diego Minneapolis Rochester Milwaukee Grand Rapids Buffalo Chicago Detroit Cleveland Newark New York, Suffolk Pittsburgh Philadelphia Denver Indianapolis Columbus Baltimore Washington Kansas City Cincinnati St. Louis Richmond Louisville Norfolk Greensboro Oklahoma City Charlotte Birmingham Atlanta Fort Worth Dallas Jacksonville Austin New Orleans Houston San Antonio Orlando Tampa Fort Lauderdale Miami THE 53 PRIMARY METROPOLITAN STATISTICAL AREAS INCLUDED IN THE ACCELERATED BENEFITS DEMONSTRATION Note: New York and Suffolk count as two distinct Primary Metropolitan Statistical Areas. 6 each region of the country. Hence, results from the evaluation will be limited to its effects on participants in these areas and will not necessarily reflect the potential effects in other areas, especially rural counties. HOW WILL THE RESULTS BE DOCUMENTED? The research team will document findings in three reports throughout the implementation of the AB demonstration until the completion of the project in January 2011: The Project Monitoring Report (expected February 2009) will provide information on how AB and AB Plus services were used during the first six months of the demonstration and will describe any differences in health benefits usage by AB and AB Plus treatment groups. The Interim Report (expected October 2009) will describe the enrollment process and the characteristics of the target population. This report will document how the interventions are being delivered by drawing on quantitative and qualitative data. The Final Report (expected January 2011) will contain a full evaluation of all activities, including a summary of the implementation, impact, and cost-benefit findings.

7 SEPTEMBER 2008 NOTES 1 Riley, Gerald Health Insurance and Access to Care among Social Security Disability Insurance Beneficiaries during the Medicare Waiting Period, Inquiry 43, 3: SSDI beneficiaries with certain disabling conditions and beneficiaries who have a more recent prior period of disability immediately qualify for Medicare (i.e., they do not have to serve a 24- month waiting period). SSDI beneficiaries who concurrently receive SSI are usually immediately eligible for Medicaid. 3 Beneficiaries are not eligible for the study if they have a representative payee (i.e., people who receive payments on behalf of the beneficiary), reside in an institution, or have cognitive or physical impairments that preclude their reporting for themselves during a telephone survey. 4 A total of 431 beneficiaries were actually screened; however, four people did not complete the full interview after the screening and, hence, were not eligible for random assignment. PROJECT TEAM MDRC was awarded the contract to implement and evaluate the AB demonstration in January 2006, and the demonstration is scheduled to be completed in January MDRC and Mathematica Policy Research (MPR) are collaborating on data collection, research, and analysis; POMCO is administering the AB health plan; and CareGuide and TransCen are providing the additional AB Plus services. The project team also includes a group of expert consultants in the fields of rehabilitation, behavioral health, and employment and training who have helped design the intervention and are providing technical assistance to the program staff. ABOUT THE AUTHORS David Wittenburg is a Senior Researcher at Mathematica Policy Research. His research focuses on public policy issues for people with disabilities, with a particular focus on evaluations of employment initiatives for adults and youth. Peter Baird is an Associate at MDRC, where he oversees program operations for several disabilityrelated research grants. He has over 15 years of experience in public policy, legislation, and research relating to Medicaid and employment for people with disabilities. Lisa Schwartz is Vice President and Director of Survey Research at Mathematica Policy Research. Her expertise is in survey methodology and in leading large-scale data collection efforts that are focused on the interrelationship between employment and health. David Butler is Vice President and Director of MDRC s Welfare and Barriers to Employment policy area. He has spent the last 18 years at MDRC leading evaluations and demonstration projects designed to improve economic outcomes for people with significant barriers to employment. FUNDERS This policy brief was prepared by MDRC under contract SS with the Social Security Administration. Dissemination of MDRC publications is supported by the following funders that help finance MDRC s public policy outreach and expanding efforts to communicate the results and implications of our work to policymakers, practitioners, and others: The Ambrose Monell Foundation, Bristol-Myers Squibb Foundation, The Kresge Foundation, and The Starr Foundation. MDRC s dissemination of its educationrelated work is supported by the Bill & Melinda Gates Foundation, Carnegie Corporation of New York, and Citi Foundation. In addition, earnings from the MDRC Endowment help sustain our dissemination efforts. Contributors to the MDRC Endowment include Alcoa Foundation, The Ambrose Monell Foundation, Anheuser-Busch Foundation, Bristol-Myers Squibb Foundation, Charles Stewart Mott Foundation, Ford Foundation, The George Gund Foundation, The Grable Foundation, The Lizabeth and Frank Newman Charitable Foundation, The New York Times Company Foundation, Jan Nicholson, Paul H. O Neill Charitable Foundation, John S. Reed, The Sandler Family Supporting Foundation, and The Stupski Family Fund, as well as other individual contributors. The findings and conclusions in this report do not necessarily represent the official positions or policies of the funders. 7

8 MDRC POLICY BRIEF Health Benefits for the Uninsured Design and Early Implementation of the Accelerated Benefits Demonstration M any Social Security Disability Insurance (SSDI) beneficiaries have serious health care needs, but, under current law, most are not eligible for Medicare until 29 months after the Social Security Administration (SSA) has established the onset of their disability. To test whether providing immediate health care and related services leads to improved health and better return-to-work outcomes for newly entitled SSDI beneficiaries, the SSA funded the five-year Accelerated Benefits (AB) Demonstration. AB will provide the first set of rigorous findings on the efficacy of providing earlier access to health benefits for a population of beneficiaries who have no medical coverage when they first become entitled to disability cash benefits. This brief provides an overview of the AB project and describes findings from the initial phase of enrollment from October and November 2007 and plans for full implementation. mdrc BUILDING KNOWLEDGE TO IMPROVE SOCIAL POLICY 16 East 34th Street New York, NY